a comprehensive unofficial resource site for everything about M.E. (Myalgic Encephalomyelitis)

Wednesday, 29 February 2012

YouTube Channel: GetwellfromME

Another YouTube channel promoting M.E. awareness comes from Giles Meehan in the form of GetwellfromME. Giles presents the very real face of an M.E. sufferer, who can do a fair amount, but is by no means 100%. He covers M.E. in a dozen or so bite-sized episodes, talking about all the symptoms that he's experienced, some of the ideas behind what might cause M.E. - Giles is quite strongly convinced that there is a viral link that harbors around the base of the neck area, since he is prone to headaches and stiff neck - and what people around M.E. sufferers can try and do to help them. Giles also runs an associated blog (link in right hand menu). I think the most important audience for Giles's videos are friends and family of M.E. sufferers. The information is presented really accessibly for those who don't have M.E. but would like to know more about the condition.

Episode summary:

1: Giles had a cytomegalovirus (a herpes virus) at the end of his university studies, although he also mentioned carbon monoxide poisoning from a gas boiler. He spent most of his twenties housebound. He has gradually made it back to work, although has relapses. Clearly his intended career plans have been ruined. He talks negatively about the UK's NHS 'treatment' for M.E. Like Giles, I'm seeing that the only way for M.E. sufferers to get any decent help is to seek it out from themselves independent of the National Health Service. Again, it's down to the sufferer to be as best-informed about M.E. as possible. Already in the couple of months that I've been researching M.E. to the degree I'm doing now, I'm finding out so much information that I don't think I would never have known to existed if I'd just relied on a regular doctor for help.

2: Current UK stats - M.E. is twice as common as M.S. M.E. is the most common cause of school absence.

3: Giles runs through a list of symptoms that a typical M.E. sufferer might have. This list is common to other M.E. information sources out there.

5: Reminds us that there is no diagnostic test for M.E. but a process of elimination of other illnesses, mainly through blood testing. Doctors generally only give a diagnosis of M.E. if the symptoms have persisted for 6 months or more.

6: A symptom that Giles mentions that I hadn't seen listed elsewhere is frequent urination. Again, that brings back the close parallel of symptoms between M.E. and diabetes. One thing that I had noticed was frequent urination at night, whereas during the daytime it was quite normal. I was really convinced for a long time that I was going to get diagnosed with diabetes, but blood tests haven't showed up any indicators of diabetes at all. The only explanation I can offer for frequent urination at night, that is my own personal take on it, is that in M.E. sufferers, the body clock and body processes don't synchronize properly when it's meant to be time to go to sleep. Again, this would link back to the theories centering around hypothalamus dysfunction as the root of M.E. which suggest that there is an overdrive in chemical messages being triggered around the body.

7: A useful video for a friend of an M.E. sufferer to watch. Giles believes the most important thing is for an M.E. sufferer to be believed when he/she says they have M.E. As an invisible illness, there is a lot of prejudice and disbelief against M.E. As a friend of an M.E. sufferer, just offering to be there if he/she needs them is really the most that any M.E. sufferer could want to hear from a friend. Great message, Giles!

8: Giles continues the tips for friends and relatives of M.E. sufferers. He advises not to overwhelm them with articles and information about the latest M.E. miracle cures. This type of 'advice' can only make an M.E. sufferer feel like he/she is not doing enough to get better. Another good tip is to understand that an M.E. sufferer's well-being can suddenly change and that they just need to go and lie down when a few moments earlier they seemed fine.

9: Giles has some good advice for those looking to try and apply for benefits as an M.E. sufferer - to get someone who has already gone through the process of obtaining and filling out the forms to help you. It can consume a lot of energy to go through a claim process. Giles also suggests approaching the Citizen's Advice Bureau for information on what entitlements you might have as an M.E. sufferer. Giles then goes on to recommend Emily Collingridge's book, Severe ME/CFS - A Guide to Living. Finally, another good tip he gives is to join a support group to share information. Again, the onus seems to fall completely on the M.E. sufferer to get help.

10: M.E. is not just about being tired all the time. It's an acquired illness that seems to have some genetic disposition passed down by the mother. M.E. often starts in a young adult following a virus or exposure to toxins or vaccines. Sometimes there is no clear starting point, but a gradual decline - that certainly has been my own path. Autopsies of M.E. sufferers and clinical studies have been shown to find inflammation in the base of the brain.

11: Giles mentions some of the current theories for what might cause M.E. These include virus groups such as polio, herpes, XMRV, and enterovirus. Adrenal burn out, thyroid and hypothalamus disorders are also mentioned.

12: Giles presents quite a nifty diagram showing all the factors that might add up to cause M.E. At the top, Giles suggests that genetic disposition might also be an overriding factor to explain why some people will develop M.E. when exposed to the same conditions, while others don't.

1?: M.E. has been recognized by the World Health Organization in the International Classification of Diseases since 1969 as a distinct organic neurological disorder.

Thank you to Giles, and all the best in finding your way to a greater level of recovery.